On the 3rd of May 2019 our son Peter tragically died at home, suddenly and unexpectedly. The death was recorded as SUDEP (Sudden Unexpected Death in Epilepsy). My husband and I were to suffer the acute trauma of discovering our child’s lifeless body in his room at home and the continuing trauma of a life without him.

No one in Peter’s epilepsy care team ever had a conversation with us about SUDEP or that he was becoming increasingly at risk. We are also discovering the distressing and painful fact, that this is the case for many other young men and women with epilepsy who have sadly died.

The ‘Stop SUDEP Silence‘ campaign aims are to create a movement to embed the message that although considered rare, Sudden Unexpected Death in Epilepsy is a very real risk. That clinicians must inform patients and care givers of SUDEP at time of diagnosis or soon after as the NICE guidelines dictate. This will inevitably avoid future unnecessary deaths.

The Peter Doody Foundation’s ‘Stop SUDEP Silence’ campaign #DoNoHarm is calling for the following to significantly reduce further preventable deaths:

1. Inform people living with epilepsy about SUDEP in its entirety to ensure they fully understand. To not avoid using the word SUDEP and what that means by only talking about generic ‘risk’. Patients should be informed of all mechanisms of SUDEP including heart and respiratory failure.

2. An annual SUDEP Risk Plan (SRP) as part of a Comprehensive Person Centered Care Plan (CCP) with clear set pathways. Both plans to be nationally set to provide consistency and increased chance for optimal care. A copy of the SRP and CCP countersigned by and given to the patient.

3. Share the CCP with members of the patients care team and encourage parents/carers to attend appointments to avoid assumptions that because the person living with epilepsy is of adult age they want to have lone responsibility of their care.

4. Seizure Detection Device (SDD) information and guidance, inclusive of other aids such as sleep safe anti suffocation pillows, to be given at appointments with accompanying literature.